An excerpt from A Failure of Imagination: How the Healthcare System Fails Neurodivergent People—and What We’re Doing Instead.
I’m a physician. That’s the only formal training I have. When I set out, I didn’t know how to start or run a nonprofit. I didn’t know how to build a medical practice, let alone a model of health care delivery from scratch. But I did know this: If you want to improve the lives of neurodivergent people, you have to change the world. To do anything for the neurodivergent community, you have to do everything. It’s not just health care; it’s loneliness, it’s school, it’s work. It’s everything.
But first you have to be honest about what’s not working.
You can follow every rule and still cause harm. You can show up with compassion, with training, with a genuine desire to help, and still leave someone worse off than when you found them. That’s one of the hardest truths about working in health care, and one of the hardest truths about receiving care, too. When that harm becomes routine, built into the system itself, it stops looking like harm at all; instead, it just looks like “how things are.” We tell ourselves the system is broken, but in reality, it’s working exactly as it was built to work. Or to not work. It’s about confronting the reality that the system isn’t built for patients, who can reach care, who gets heard, who benefits, or for the people trying to care for them, too. It’s about taking on the challenge of rebuilding the system from the ground up.
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But before I tell you how we did that, I have to tell you why we needed to. You first need to understand the gap between the kind of care I believed in and the reality the health care system produced.
This story begins with medical school.
I remember thinking in August 2008, the night before I uprooted myself from New York City to move to Vermont for my training: I want to be the person someone can go to when they don’t know what’s going on with their body. I want to be someone who can help them make sense of it and not feel alone. That’s what I thought medicine was all about. Then I started medical school, and almost quit, twice. Not because of the education itself, which was genuinely excellent, but because of what I saw happening all around me: my first view of the inadequacies of the health care system from the inside. I couldn’t believe that this system-centered factory churning patients through on a conveyor belt was what I’d spent nineteen years of school training for. No one had time to notice when something didn’t make sense, or asked what mattered to the patient. And worst of all, everyone acted like this was normal.
Dr. Gabe Worzella, a family physician, explained it to me this way: “What’s normalized is the dysfunction of the system. This is just the way it is, so this is what we have to do. So we’re gonna keep doing it.”
Everyone I talk to these days describes the same experience in different words: a system that doesn’t make sense, yet no one can explain why. It’s the inevitable result of a system built around the convenience of institutions rather than the needs of people. Whether you’re a patient or a provider, the message is the same: Adapt to the system or be left behind.
“Act in this way, communicate in this way, or you will go unheard,” laments Worzella. “And not everybody can make that adjustment. So those are the people who are staying away from health care because it’s overwhelming or confusing or uncomfortable, or unsafe.”
Patients aren’t the only ones pushed out for not fitting the mold. Clinicians are also expected to contort themselves to survive in a system that rewards conformity, productivity, and efficiency over connection. This begins very early on in training. As Worzella puts it, “They tell you, this is how you communicate, this is how you gather information, this is how you take notes, this is how you study, without ever knowing anything about your brain. You try to fit yourself and mold your brain and your whole way of being into the box, who knows who designed it?”
That’s where my story picks up, not at the margins, but from inside the machine. I did exactly what Worzella describes. For more than a decade, it worked, until it didn’t.
My first job after residency was my dream job, a federally qualified health center that I had long hoped to join, offering the kind of comprehensive family medicine I had trained for. We even covered our own patients when they were hospitalized so that nothing fell through the cracks with transitions of care. I was part of a team that cared deeply and tried hard to meet people where they were. But even the best intentions couldn’t withstand the pressure of the COVID-19 pandemic. Under conditions of scarcity, systems become extractive; in my case, that extraction cost me my health, up to and including autistic burnout, a state of profound exhaustion that stripped away my ability to mask traits I had subconsciously suppressed for decades. I could no longer access the strategies I’d once relied on to pass as “OK.” Finally, at age thirty-seven, I appeared close enough to the stereotypes that clinicians are trained to match to diagnostic patterns: autism, ADHD, dyslexia, dyspraxia, and dyscalculia. Yep, these would have been good to know earlier.
But this story is much bigger than just my own. The same system failed my patients and failed people all over the country, even all over the world. This is the story of a group of people coming together to reimagine health care delivery by putting aside the arbitrary distinctions between physical and mental health, and between health care and the rest of life; by rejecting the hierarchical power dynamics that pit clinicians and patients against one another; and by recognizing that the villain here is the health care system that thwarts patients and clinicians alike.
Melissa Houser is a family physician.
